Wednesday, November 27, 2013

Friday, November 1, 2013

Our little cowgirl had a great Halloween. I took this picture in the morning and then had to take off her dress and bandana to send in to school. She kept pointing at it wanting to put it back on. A friend asked me how I got her to pose - ha ha! That is SO funny! I take about 50 shots hoping for one good one, once in a while I get one although I am sure this is not the best shot with all of the stuff in the background, and my lens must have been dusty. But Katie looks good and is a happy cowgirl so I am good with that.

Katie is doing great although she recently went through a month or so of being defiant. I was thinking maybe it was just the terrible twos since we never did go through that. Every single day we would get notes sent home from school about Katie not wanting to get out of her chair (stiffening her legs) to find her name on the board, or throwing puzzle pieces around, etc... Having no other kids, my best guess was that she realized that she can say no... oh no!

I noticed it at home too: not wanting to eat eggs and other healthy things anymore, throwing toys around, and having a bit of a temper tantrum occasionally which she really didn't have before. Well, it seems to have gone away and she is back to herself, although she will only eat eggs when Dad eats them with her. I hate eggs, so that works for me!

I have put her on Juice Plus+ since she will not just open her mouth like a little bird for me anymore and refuses vegetables. It is a gummy that is made from the actual juice of fruits and vegetables, and they say that usually kids will start to crave more vegetables because their body is used to (now) having it - okay so don't quote me on this, but that is the general idea. It seems to be working as she will eat up these gummies like nobody's business, and also drink these smoothies I make with carrots and tomatos thrown in. It also helps to put on Teen Beach Movie as a distraction!

So all is well and we are still waiting for Katie's DNA results. I try not to get too hopeful and would hate to have to write about not so great results - but I hope we find out something. Any good thoughts sent our way are appreciated! Very much! I will let you know as soon as we know, hopefully by Christmas.

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Katie's Story!

Read our story on the ViaCord website - click on the picture above

welcome to my blog!

Our daughter Katie, underwent a cord blood transfusion at Duke Medical Center in early January 2010. It was her own (umbilical) cord blood which we had saved at birth through a company called ViaCord. Not really thinking we would ever have a need for it, we were absolutely THRILLED at the thought that her own cord blood might be able to change her life, and help her to progress faster.

We are very hopeful that this procedure will help Katie to progress faster in overcoming her many physical delays. Mentally she seems to be fine, able to understand, and tries to communicate, but her physical delays hold her back.

What is expected is that the stem cells in the cord blood will repair or replace any damaged cells, or form new connections anywhere in her body that needs it. We were told not to expect much for at least 6 months - that most parents report a jumpstart in therapies at about that time. However, there are those families I have seen on youtube or the news who have incredible results - some even right away, and I can only be hopeful that we will have a similar experience. After all, I am her mom!

I believe that with the help of Katie's therapists, caregivers, and family, that I will be able to objectively sort out any milestones or changes that may be due to the stem cell transfusion, and that is what this blog is all about!

04/20/16 Katie has been diagnosed with a very rare gene mutation on the gene GRIK2. TGen is who found this gene mutation and put us in touch with a scientist at Northwestern University who is doing further research on Katie, specifically. So awesome!

about Katie

Katie was diagnosed with hypotonia at age 1, which is basically weak muscles, not really a true "diagnosis". We have no idea why she has this, but it delays her in many areas such as crawling, sitting, walking, talking, and fine motor skills. Katie is now 10 years old and she started walking about 4 years ago but still unsteady. Her coordination and balance are something we are constantly working on.
She did wear glasses from ages 2-4 and then her vision improved and she doesn't need them anymore, which is so great! Getting glasses on her was not easy - had to come from behind and put them over her head that way. It's nice not to have to worry about getting the glasses on her any more!
Katie can totally understand what you say, nods her head for "yes", has a few signs (for "more" and "me") but still is not able to talk much at all. Maybe a few words.
Katie is a work in progress!